Published on in Vol 15 (2023)

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/46607, first published .
An Ethics Action Plan for Rare Disease Care: Participatory Action Research Approach

An Ethics Action Plan for Rare Disease Care: Participatory Action Research Approach

An Ethics Action Plan for Rare Disease Care: Participatory Action Research Approach

Ariane Quintal   1, 2, 3 , PhD ;   Isabelle Carreau   2 * , BA, MA ;   Annie-Danielle Grenier   2 * , BSc ;   Caroline Hébert   2 * ;   Christine Yergeau   2, 4 * , MSc ;   Yves Berthiaume   2, 5 * , MD ;   Eric Racine   1, 2, 3, 5, 6, 7 , PhD

1 Département de médecine sociale et préventive, Université de Montréal, Montréal, QC, Canada

2 Ethics and Rare Diseases Working Group, Institut de recherches cliniques de Montréal, Montréal, QC, Canada

3 Pragmatic Health Ethics Research Unit, Institut de recherches cliniques de Montréal, Montréal, QC, Canada

4 Regroupement québécois des maladies orphelines, Sherbrooke, QC, Canada

5 Département de médecine, Université de Montréal, Montréal, QC, Canada

6 Division of Experimental Medicine, Department of Medicine, McGill University, Montréal, QC, Canada

7 Department of Neurology and Neurosurgery, McGill University, Montréal, QC, Canada

*these authors contributed equally

Corresponding Author:

  • Eric Racine, PhD
  • Pragmatic Health Ethics Research Unit
  • Institut de recherches cliniques de Montréal
  • 110 Av. des Pins
  • Montréal, QC, H2W 1R7
  • Canada
  • Phone: 1 5149875723
  • Fax: 1 5149875763
  • Email: eric.racine@ircm.qc.ca